Taking dd2 to doctors this afternoon, no idea what to expect

[thesockmonsterofdoom]

she has been gluten free for a year and has very sever e reatcions to any gluten. However even gluten free she still has liquid poo, often green or black which always coveres her clothes and body, she is starting to get really upset by this and had to be stripped completley and cleaned with baby wipes at play group this morning which really upset her.
I am worried about doing any further elimination diets as I struggle already with just gluten free. I have done dairy free before but never both at the same time.
I am worried that the doctor will say she should go back on gluten as she has never had any tests and her older sis tested negative for coeliacs although she is treated as coeliacs because the difference in her weight, health and personality and energy levels were amazing.
I have avoided being in the system for a long time as dd1 was always getting weighed when she was younger and health visitors and doctors constantly told me how underweight she was and that I could not have been feeding her properly (she never ate until she went gluten free). I am really worried about putting wither dd back into the system that doesnt acknowledge problems without a test result to confirm them and that they will insist I give her gluten or something.
Sorry i am ramnbling now.
Does anyone know what I can expect from today, will she be referred on somewhere and if so who to, will I just be sent away as neurotic mum and flagged up with health visitors etc again.
Sorry i am so nervous.

Oh I missed this earier. You have probably gone now.

From the sound of it you really do need a referral. You don't sound neurotic to me.

Hope everthing goes OK

Got a referral to pead at the childrens hospital, doctor was on about gluten loading and biopsies but I said I didnt want to, think she thought if she referred me they would argue with me. Am actually more nervous now than I was before, never mind at least the ball is rolling.

But you will get some good qualified help now.

are you a bit pleased about the referral? I would hate not knowing what was causing it.

luckily the only thing I have had with mine has been easily diagnosable (talipes or club foot), but I have seen the relief of other parents in alder hey who finally get a diagnosis and can then do something about it

Thanks, I know it is a good thing hopefully we will get to the bottom of things now.

how does she react to gluten? They won't be able to get results from a biopsy unless she is back on gluten but they can talk about that at the hospital.

As an alternative to a gluten and casein free diet you could see if adding digestive enzymes to her diet helps. I use biocare glutenzyme plus as it helps with both gluten and dairy. However if she was coelic that wouldn't be wise as it doesn't help wiith all the gluten, it just reduces the damage.

I think Peptizyde is a suitable one - I'll look up name and place to buy if you are interested.

had a quick google, that sounds amazing, is there any reason that doctors have not suggested this route for dd1 who reacts with all the symptons of coeliacs but tested negative?
Could there really be a magic pill that means my dc could eat normal food?
My mum also had a negative biopsy but reacts badly to gluten, going to tell her to look as well.

I don't know why more doctors don't mention digestive enzymes. Doctors don't have much time to keep up with anything new and have a tendency to regard anything not pushed by a major drug company as snake oil . They also have a tendency to believe if tests are negative its all psychological.

Being more charitable - it doesn't solve the problem if you really are coeliac (yet, there is hope that such enzymes may be developed). A good doctor would want you to get a biopsy first because if you were coeliac you might reduce the problems and not realise there was still damage to your gut. So might be OK for your mum but not an alternative to being gluten free for the children unless they've had a negative biopsy.